Hello All,

My brother finised 2 chemos and 10 radiations and he went to hospital yesterday to get the 3rd chemo. The Medical Oncologist told us to finish the radiation first (All 30) then he will plan the remaining four chemos (plan is 6 chemos total)

Treatment details are at :
http://www.oralcancerfoundation.org/ubb/ultimatebb.php?/ubb/get_topic/f/2/t/000644.html

I called up the Doc yesterday to find out why, and he said my bother has severe mucositis and he would like to wait until my brother completes his radiation. My brother is compaling about some kind of sores in his mouth that are causing sever pain (mucositis i think). They are giving him some medication to take care of them

I am scared now. Will this effect his cure?

I though mucositis is a side effect of radiation, but looks like it is a chemo effect.

Please advice.

Praveen

Mucocitus is a side effect of both radiation therapy and chemotherapy for head and neck cancer. It is not unusual for oncologist's to suspend chemotherapy during radiation and should not effect your brothers remission.
Darrell

Hi Praveen,

When John started his treatment the medical oncologist (MO) said he was recommending 3 doses of chemo -once every 3 weeks concurrent with radiation- but that we should be prepared for the possibility that he would not be well enough in some way to have the third dose.

The MO told us that just over half of people with head/neck cancer aren't well enough to be given the third dose and that there is some research that indicates there is not a big difference in outcome between 2 and 3 doses.

There seem to many different approaches to treatment but that was what we were told.

Mary

Mary is correct and I too had my chemo shortened by one. I am a 3+ year survivor.

Thank you all for your responses.

I just spoke to MO and he said two rounds of chemo is kind of standard in this type of patients and he is confident that the two my brother took should clear eveything. The MO wants to complete the radiation because it is the most imp thing at this point and chemo is multiplying the mucositis which he suspended for now.

My brother is tolerating radiation well and they gave him some medication which seems to be working fine for the mucositis. He is planning on completeing the remaining radiations.

The MO studided my brothers file one more time for me and said he is responding very well to the treatment and he thinks everything should be OK.

After reading your responses and talking to MO, now I am not scared and hoping for the best.

Thanks you all once again,
Praveen

Radiation HAS to be completed - chemo doesn't. Radiation is the primary treatment modality. the ct is merely an adjunct.

Hello All,

My brother was able to finish his 30 radiations with a great deal of pain. He finished his radiations a month ago and the last one month he suffered a lot because of the side effects (severe mucositis). Last week he went back to the hospital and the MO gave him his 3rd round of chemo as follows

Day 1 : Cisplatin 50mg / Docetaxel 80mg and 20 mg / grafeel 300mg
Day 2 : Cisplatin 50mg / grafeel 300mg
Day 3,4,5 : grafeel 300mg

Now he is not doing well, and this is the worst time for him during this whole treatment (in the last 5 months). The MO wants to finish remaining 3 chemos and my brother does not want to go through the pain again.

I am reading some posts on this website where chemo was stopped intermittently and some people are saying with out radiation, chemo is not that useful.

Does it affect the out come at this point if he does not take the remaining 3 chemos?

Should I ask the doc to change the medicine or change the combinations? I read some where on the form where people are saying the side effects of Docetaxel are horrible?

When do they actually do the next scan to figure out how effective the treatment was and what needs to be done?

Looks like my brothers treatment took longer than most of the others because of the side effects. By god's grace he will be ok after all this pain and suffering.

Praveen

Praveen,

Although your brother's treatment was/is different than my husband's, I do know that a couple of weeks post treatment John felt even worse than he had during treatment. Not sure if everything was just built up in his system but his mucous problems, body aches and heavy fatigue came on really strong at that point. It was alarming, but as many people on this site have experienced, it did eventually pass.

Hope not too much time passes before your brother is finished with treatment and its strong side effects began to diminish.

all the best
Mary

Praveen,

My chemo was delayed until I was a month into radiation, due to what was (ultimately) a false positive on a PETscan. I was to have 6 weeks of radiation concurrent with 6 weeks of chemo. Instead, I got one chemo treatment a month after I started radiation. I was already so sick from radiation, I couldn't take the chemo on top of it, and discontinued. After I finished radiation, I went back to the MO and RO to find out if I should undergo the chemo.

The MO said there was no protocol for it, I could try it and if it made me too sick, discontinue. The RO said there's no point, it would be like 'putting on the meat tenderizer after the steak was done' In other words, the purpose of chemo (as I understand it) is to 'enhance' the radiation. Radiation is the curative 'driver'.

Riley

Praveen,
remember also that tumors shed cancer cells into the blood everyday so the chemo will take care of those also, even if it isn't a "front line" cure for head & neck cancer. It used to be that the primary chemo was Cisplatin, administered every 3 weeks during radiation but more and more are getting different chemo treatments now like F5U, Taxotere and Erbitux.

Praveen, Radiation and chemo can be combined in many different ways. An individual's treatment plan will have little in common with the next person's plan - they are not comparable. I had a series of daily chemo treatments for several weeks. Then twice daily radiation with concurrent chemo mon-fri, week on, week off, for 12 weeks. Different clinics often have their own approach to combining these therapies. Ask the docs lots of questions and let him/her defend their treatment decisions, but avoid the temptation to compare your brother's treatment plan with others. It sounds like the docs have a rationale for their decisons about your brother's care. Thats what counts. Luck to you and your brother. Be strong. Tom J

Thankyou all so much for the responses. I will talk to the doctor soon and let you guys know what he says.

thanks
Praveen

I'm glad to see this thread, as I just finished my 3rd week of radiation and will be getting the 2nd chemo round in 3 days.

So far, the worst of the radiation has been the mouth/throat soreness. The edges of my tongue were severely nuked because the bite stick forced the outer edges hard against the inside of my lower teeth, just chock full of fillings bouncing the radiation right into my tongue. I used several pieces of gauze to try to buffer things, but it didn't do any good.

In desperation, I asked the RO about using a plastic mouthguard (like the type used at night for teeth grinders). Found an inexpensive one at the local drugstore, you just heat it up, form it to your upper or lower (designed for uppers, but works as well on the lower, where my problem was), and away you go. The doc looked it over and approved it. Fits comfortably, even with the bite stick, and the clear flexible plastic covers all the metal, protecting my tongue along the sides. Thought this hint might help someone else too, but be sure to ask your RO first.

As for the pain in my tongue and throat, the RO gave me a prescription for liquid painkiller (codeine based, I believe, and not much help except to make me sleepy) and for something called Barcus Solution. Rather thick, I can taste clove in it, and it has instantaneous numbing to the mouth and upper throat (you swish it around in your mouth, then swallow it). Seems to help reduce tongue swelling, too. I can't find any medical reference to this stuff, so don't know what all is in the compound. No info on the pharmacy sheet that accompanied the Rx either. But it helps, at least so far, and another good thing to ask your RO for.

Biggest surprise was I'm losing my hair by the fistful now. I first thought radiation overdose, but they insist I'd only likely lose hair in the areas they "shoot" through, like in front of the ears. Possible it's from my one dose of Cisplatin three weeks ago, I'll have to ask this coming Monday when I do dose #2.

And though I pretty much sailed through the first chemo, I'm seriously thinking of not doing the final 3rd round. If my mouth/throat is this bad not even halfway through my 7 weeks of radiation, what will it be like at the end of those 7 weeks when they want to add even more insult to injury?

In any event, if you have problems or questions, keep asking your doctors/nurses/techs!! Sometimes they're busy and don't want to spend the time, but you have the right to the information and don't have to suffer in silence.

Sharon
(T2 widsom tooth area on left, n0 soft palate mostly on left, but they're radiating 3 areas: left and right wisdom teeth areas, soft palate, throat/esophagus down to the first couple of inches of my lungs)

HI Sharon,

Thanks for sharing your experiance even though you are under going this nasty treatment. Good luck and god bless.

thanks
Praveen

SharonD: My husband finally was relieved of pain when he received 150 mcg of Fentanyl intradermal patch. Before this he was receiving Roxicet (liquid form of Percocet, which seemed to be covering the pain all the way up to the last chemo treatment).

In addition, once the Fentanyl kicked in (which is 24-30 hours after application of the patch), a liquid form of morphine called Roxenal finally worked for him.

As I posted earlier, he did end up in the hospital because he was so dehydrated from not taking anything in orally and the pain was so extreme. At this point, the full affects of the Fentanyl had not yet kicked in.

While in the hospital, he was given Decadron (steroid) which helped very much in decreasing the swelling inside of the mouth.

To give you hope, just 2 days after the completion of his treatment, he is back to speaking well, drinking boost, eating soup and taking full liquids with pain well controlled.

If you do anything, don't ask, but tell your doctor you need something better to control your pain!

Hello All,

I am very happy to tell you all that my brother got all clear in his recent visit to the hospital. After going through 4 chemos/30 radiations, he recoverd from the big C.

Doctors told him that the ultra sound/ X-ray reports are all clear. Now he needs to do the routine 6 month checkups. May be they will do the PET/MRI scan after 6 months but for now they are confident that every thing is OK.

At first I was really scared and I have no idea that the doctors in India will be able to treat my brother's advanced SCC, but they proved that they can. I spend about 10K USD for the whole treatment and I think that is the best money I ever earned in this country.

I am really really happy yesterday when I heard this news. Thank you all for your great support and this site helped me a lot in terms of coping up with the situation.

thanks you all,
Praveen

My husband had three weeks of chemo and three weeks of radiation and was just in the hospital for 10 days because his mouth and throat were so bad. He was getting Cisplatin and Erbitux. The doctors actually decided to stop chemo as radiation is the primary treatment. Based on the fact that he does not have a large tumor they are trying to shrink, stopping chemo shouldn't be such a deal breaker. He did have a PEG tube put in as he has lost 30 pounds and was not eating. So far the tube seems to be working well and he is now eating only through the PEG tube. He told the doctors he had been in the worst pain of his life and they had to do something so they concluded he should stop chemo. He has three weeks of radiation left and starts radiation again today after a two week break. He is terrified about the side affects this time around.
Heidi

Heidi, it sounds like he is going to be one of the unlucky in terms of getting walloped by side effects. This will be tough for you both to get through but the PEG will help alot.My suggestion to you is that you ask him continually to tell you if he is in pain and, if so, you insist on adequate medication for him. In our case, the radiation was much harder than the chemo [Carboplatin\Taxol and now Erbitux] I feel for you- this is a really hard thing to watch your husband go through. You are going to have to be very strong. Keep posting and e-mail any of us that you think might help you cope. Amy

Hello Heidi,

You are right regarding the chemo. Doc might stop the chemo for a while if the side effects are untolerable.

Do not worry at all. My brother took over 7 months to complete his 4 chemos along with 30 radiations, but at the end things are looking good. He also lost 35 pounds during his treatment but now he is regaining his weight. He also suffered a lot with severe mucositis which kind of suspended his chemos.

Hang in there, your husband will get better soon
and he will get all clear.

thanks
Praveen

Heidi,

Tell him to try to get the strenght to finish his Tx as fast as possible. The reason the docs don't like to break is that it gives the cancer cells more time to heal themselves.

Studies are being done as we speak to increase the rad dosage; double up some days; increase the number of rad Txs received and shorten the time frame this is all accomplished. All of this is done to reduce the ability of the cancer cells to fight off the attack.

I hope they also remember they need to keep us alive at the same time.